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Lupus and Guilt

I know it's not my fault that I have Lupus, but I often find myself feeling guilty, especially in situations where I feel I am letting somebody down. Luckily, most of my friends have been understanding and accomodating to my illness, but when I am too tired to go and hang out or spend time with them I feel guilty. Also, there have been times when I have gone out and I feel as though I have put a damper on the whole atmosphere- if I can't eat what everybody else is having or I need to get food so I can take my meds, etc.
Sometimes I feel like I can't properly enjoy my youth- and when I do ignore what I need to do to control my Lupus, I feel guilty AND sick!

On top of that, I find myself at times getting angry with my immediate family. They have been extremely supportive, but in the past months I think they have forgotten that I have this condition, in a sense. Before they were very concious about the things they bought from the supermarket, but as time goes on more and more foods that I am supposed to steer clear from have been reintroduced into the house. It feels like a kind of betrayal, especially when they eat it in front of me. I know it is my burden to bear and I shouldn't have others carry my cross, but sometimes it really hurts when you and you alone can't enjoy what everybody else can due to a stupid condition.

Sometimes it just drives me crazy!
I'm actually lucky compared to most, I have managed to get most of my symptoms under control for now, but I just miss not having to think about things so much- and I hate feeling guilty all the time!

Hi Patricia, I too find myself struggling with guilt when I don't spend much time with my friends because of my physical limitations. My friends and family are supportive but they still sometimes forget what I can and can't do and it can be frustrating. However, I just keep reminding myself that my friends mean well (sometimes to cheer me up) but being a teen, I find young people don't really understand the concept of being chronically ill. To them, being sick is like catching a cold or flu where you eventually recover after a while.

Maybe a gentle reminder to your friends and family. Sometimes that's all it takes. I find that is something I have to do with my friends every now and again (esp. when they go shopping...lol (I don't last very long standing)

I understand exactly what you're feeling. My friends seem to forget that I have lupus and get mad at me when I have to miss school to rest. I agree that you should give a gentle reminder, and even though it's bothersome just try to ignore when they make you mad and try to understand their point of view too. I know it's not "right", but it's better than being guilty all the time.
I hope you feel better. Dealing with things like this can be worse than the symptoms themselves sometimes.

Hey I know exactly how you feel. I'm at University and although I find making friends very easy, keeping them is difficult when you have to drop out on them. I find the best option is simply explaining your illness, perhaps linking them to wikipedia just so they can understand it better. I also get very angry, i get so infuriated when I can't do my work cause of brain fog, or can't go into uni or on nights out cause my legs hurt, but I'm lucky that y boyfriend (who i live with) and my close friends understand, and usually just bluntly tell me to calm down, because that works.
It is hard to not feel guilty, but its important to realise that if you had upset people or let them down they'd tell you. 99% of people that know about your illness will be perfectly understanding and the 1% that arent, arent worth it

Although its not so nice its nice to know that other people are going through the same thing and understand this is what im finding so hard as of late! not only do I feel bad for letting people down Im also some what jealous of all the things my friends can do with out a worry drink eat whatever stay out all night feel fine... play sports the list goes on. Stay strong you are not alone x

I say screw guilt, I've had enough of it. Take me as I am or go the frak away, is pretty much my attitude anymore. I'm lucky in that I have weeded out all the intolerant types in my life, and am surrounded by supportive family and friends who are very understanding. We didn't ask for these crappy diseases, and we have nothing to be guilty about. In fact, I think people who live with pain and chronic illness are incredibly understanding of others, accept others as they are, and have an empathy that makes them really a joy to be around. I see it everyday here. And all that, despite the fact that we feel like hell more often than not.

Just yell "Screw Guilt" a few times, you'll feel better for it. OK, I'll get off my soapbox now.

Your feelings are normal and are very reasonable reactions to losing a part of yourself to this disease. You are not at all alone, here or in your life, so don't forget it.
Are you familiar with the Kubler-Ross model (also called the 5 Stages of Grief)? This explains it very well. http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model You will probably find that this article describes your feelings in at least one or more of these stages and you will see that you are just going through an emotional adjustment right now. Different people handle it different ways. Perhaps you already have an outlet to handle your emotions but if not maybe you could try journaling or drawing or even, as Rob said, yelling.

As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.

I say screw guilt, I've had enough of it. Take me as I am or go the frak away, is pretty much my attitude anymore. I'm lucky in that I have weeded out all the intolerant types in my life, and am surrounded by supportive family and friends who are very understanding. We didn't ask for these crappy diseases, and we have nothing to be guilty about. In fact, I think people who live with pain and chronic illness are incredibly understanding of others, accept others as they are, and have an empathy that makes them really a joy to be around. I see it everyday here. And all that, despite the fact that we feel like hell more often than not.

Just yell "Screw Guilt" a few times, you'll feel better for it. OK, I'll get off my soapbox now.

Rob

BTW-Welcome to WHL Amymarie!

You are my hero! I'm the guilt queen. I feel guilty constantly whether it be friends, family, or my husband because they have to either wait for me, do something without me, or wait ON me hand and foot when I'm sick. I feel so guilty all the time like I have control over this. I know I don't but certain people in my life that claim to be my best friends are intolerant. I am going to have to start saying SCREW GUILT to myself. Nice reply thanks for this whole thread!

You are my hero! I'm the guilt queen. I feel guilty constantly whether it be friends, family, or my husband because they have to either wait for me, do something without me, or wait ON me hand and foot when I'm sick. I feel so guilty all the time like I have control over this. I know I don't but certain people in my life that claim to be my best friends are intolerant. I am going to have to start saying SCREW GUILT to myself. Nice reply thanks for this whole thread!

Wow, thank you. I'm glad my words help. One thing though, when I say screw guilt, I actually use a different word than screw! Since I'm a moderator here, if I said it, I'd have to give myself an infraction for foul language, and that would be, well, just weird!

Wow, thank you. I'm glad my words help. One thing though, when I say screw guilt, I actually use a different word than screw! Since I'm a moderator here, if I said it, I'd have to give myself an infraction for foul language, and that would be, well, just weird!

Oh Rob,
You are just a lovely young man and funny as heck.
I bet you are fun to be around.

Debbie

I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).